LNN

Oh Kara, I am so sorry! When my son slipped from known exposures, his symptoms became independent from how much time he spent with his sister (the one who exposed him). It was like the fuse was lit and the reaction was set in motion. She stopped being a factor. The only thing that stopped the reaction was a prednisone taper (and of course getting my daughter healthy). But take this with a grain of salt. DS likely had lyme so it's hard to say if the "exposure" was really what set him off or if it was part of a cycle. As you know, winter in New England brings back-to-back colds, so illness exposure could have easily coincided with some sort of tick-borne illness cycle. I know how hard last winter was on your daughter and your family. Try to remember that back then, you didn't have the doctors and ERP tools and knowledge you have now. It snuck up on you and had months to overwhelm your daughter. That won't happen this year. You are catching whatever it is early. Sucks to have to go to battle again, but you are savvy now. Please let me know whenever you need a shoulder so I can pay you back

I completely second Mams2Alex's reply. The only major difference between Bartonella/lyme and Pandas that I can see is the direct correlation with strep. All the other symptoms can be shared. My son had a very clear cut correlation to strep and yet he didn't get complete remission from the aggressive Pandas treatments of pex and IVIG. Within 2 weeks of adding the correct abx to our combo (which ironically costs us $3/mo), we saw significant improvement. After 2 months, he's the boy I always suspected was inside but could never reach. I think testing for strep is the first step, absolutely. But I wouldn't be afraid of a lyme dx. The night before our first LLLMD appt., I cried for 30 minutes. Not because I was afraid of lyme, but that it wouldn't be lyme. The only thought worse than going down the path of a second lunatic fringe disease was the thought of being out of answers for my son. Untreated or improperly treated OCD is far more dangerous (IMO) than extended use of a rotating mix of abx. Our LLMD is pretty good at using insurance-covered tests whenever possible and seems very informed on ways to protect the gut and detox the body to minimize herx. It's been a nice change to not be in the driver's seat. The one thing I would recommend would be to ask the LLMD to check immune complex levels when you do any testing. Elevated complexes can give you a false negative result. And as Momma2Alex said, the diagnosis is truly clinical, not bound to test results. Focus on the non-controversial goal of giving your daughter a healthy childhood. Then it becomes a matter of finding the most effective treatment for her and whatever label brings that becomes secondary.

I think if this problem persists, you may need to consider professional advice. But in the meantime, I'd ask yourself "what's the worst that would happen if..." So what's the worst that could happen if upend our lives to make sure someone is always with him (parent, relative, sitter) - possible answer: he learns to manipulate to get attention, parents face unpleasant consequences at work, sister resents DS. Second possible answer: you end up being there for him in what is actually a real crisis. "What's the worst that could happen if we leave him alone?" possible answer: nothing. other possible answer: ? Just my personal opinion, but I think any suicidal talk is a cry for help. The downside of not taking it seriously is just unthinkable. I hope you find answers quickly. No child, no family should have to suffer with this sort of pain.

I'm so sorry your son can't catch a break. You both must be so frustrated. You mention that it took a long time to rebound from IVIG, brain fog is a problem and he has a groin rash. I have a friend (not on the forum) whose DS12 had similar issues (had a a terrible recovery after 2 HD IVIGs for Pandas). Pediatrician said the marks were stretch marks. The mom went to Dr J and he determined it was actually cat-scratch fever marks from Bartonella and his rough recovery from IVIG was due to untreated lyme/Bartonella. The week before Thanksgiving, her son could not stand up (kept falling down), had numerous compulsions and had to leave school several days in a row because he was ticcing so badly. He had every Pandas symptom you could list. But he also had symptoms that didn't match (e.g. severe headaches). She was looking into home-bound programs. They saw Dr J last week and within 48 hrs of starting bactrim, her son has had significant relief from many symptoms. Is now back in school. He is far from "cured" but he is so much better than he was a few weeks ago. I really hate to beat the lyme drum. I know it's a sensitive issue and I really don't want to come across like just because it was true for me, or my friend, it must be true for you too. But it took me so long to see the lyme in my own son (and we live in CT - you'd think I wouldn't be so stubborn). Now that we're on the right treatment - for him - we're finally making gains that seem to be holding (he even lost a tooth the other day with only minimal neuro symptoms but no OCD). So please don't read this like I want your son to have lyme like it's some sort of club. I just know how frustrating it is to try to do everything right and still not get the results your child deserves. Take pictures of the rash so you have documentation. Maybe try google images to see if you can find something similar. Or consider an LLMD. Keep insisting on answers and trust your gut.

http://www.cpementalhealth.com/content/4/1/13 What every psychiatrist should know about PANDAS: a review by Germana Moretti et al This is one of the best "layman's" overview of PANDAS I've come across. Can be read in a few minutes. I can send you more in-depth article links if you wants more, but I'd start with this. oops - Vickie beat me to it.

DS used to have periodic fevers. Motrin would bring it down within 15 minutes, Tylenol would have no impact. Once the fever lasted steadily for 5 days, only dropping after Motrin. Other times, we'd go months, then a fever all of a sudden at 5pm, give motrin, 30 minutes later it would be gone for good. The Pandas docs and our pediatrician never had an answer to this one. Our LLMD just nodded his head. Apparently it's a common lyme symptom. Not saying this is the cause in your case. Just passing along our experience for whatever it's worth (DS likely has/had both Pandas and Lyme - not sure which came first).

I believe lyme can elevate CamK on her test but don't know if it would also elevate the other markers. Dr Cunningham has published on an autoimmune component of lyme and recently presented at one of the lyme conferences. I think it's worth an email to her to ask for clarification. We can all speculate, but she's the real authority and I probably wouldn't feel comfortable with anyone's answer but hers.

I'm so sorry. We went thru a bad time post-IVIG and it felt like it would never end. Have you contacted your doctor and discussed options? Prednisone? Mortin? I'm sorry if I should know this already, but have you tested for infections (myco p, lyme thru a specialty lab)? (now would not be the time, but something to file away for 2 months from now if this 3rd treatment doesn't get you where you thought you'd be). One idea is to try activated charcoal - if this were a herx reaction to lyme, then taking charcoal at least 2 hrs away from abx might help alleviate some symptoms. You might also look for some alpha-lipoic acid, another detox supplement (best taken in the morning on an empty stomach, but does not have to be taken away from abx). I know you are pulling your hair out, not sure how you're going to make it thru this. Jill is right - even if it requires hiring a sitter while you go for an hour long drive might help. Hold on. It may take time, but it will get better with time. You're in my thoughts.

bump.

This may help- Elisa Test The Enzyme-Linked Immunosorbant Serum Assay is the simplest, least expensive, easiest to perform, and most common Lyme test ordered. It is a test based on detecting the antibodies that our bodies make in response to being exposed to Borrelia burgdorferi (Bb). It is a preferred test by laboratories, not because it is more accurate than other Lyme tests, but because it is automated. Many different patient samples can be performed by a single machine simultaneously. This allows for a faster turnover, less costs, and theoretically, standardized test results that are consistent from lab to lab. We are told by manufacturers, health departments and clinics that the Lyme ELISA tests are good, useful tests, but in two blinded studies that tested laboratories for accuracy, they failed miserably. Lorie Bakken, MS/MPH, showed in her studies that there was not only inaccuracy and inconsistency between competing laboratories, but also between identical triple samples sent to the same lab. In other words, identical samples often resulted in different results! In the first study, forty-five labs correctly identified the samples only 55% of the time. In the latest study by the College of American Pathologists, 516 labs were tested. The overall result was terrible! There were almost equal numbers of false positives as false negatives. Overall, the labs were 55% inaccurate. The labs could only give a correct result 45% of the time. You are actually better off to flip a coin! In the quest for specificity, most ELISA tests have become so specific that the test may fail to detect antibodies from related strains of Borrelia. What makes this test so misleading is that many doctors accept high readings as an indication that the patient must really be sick. This logic is exactly backwards. If a patient is really infected with lots of bacteria, that means they have a lot of bacterial antigens floating around in the blood that are complexing free antibodies. So, as free antigen increases, free antibody decreases. Since the ELISA test detects only free antibody, a negative test might actually indicate a more serious infection. from http://www.canlyme.com/labtests.html if you want more info on ELISA and Western Blot... The other problem with ELISA and standard Western Blots from the common labs is that they follow CDC guidelines and only screen for certain antibodies to lyme and ignore the ones that are most unique to lyme. This is because they were trying to develop a vaccine to lyme in the 90's and recommended that labs not look for antibodies that would show up in a general population that had been vaccinated. The vaccine failed but mostlabs still ignore the most tell-tale lyme antibodies. Labs like Igenex and Specialty Labs do screen for these specific bands of antibodies (bands 31, 34, 39) and that's why they're preferred by lyme doctors. But even these tests are not fool proof. Lyme remains a clinical diagnosis. Blood work helps but doesn't tell the whole picture. A doctor who says the difference between tests is only financial doesn't understand what the tests are measuring or how to treat lyme (IMO). I'm sorry if I came across harshly before. I understand how painful this is and how impossible it feels to deal with sudden irrational anger. It sounds like finding the proper medical treatment will be key. Just keep yourself safe in the meantime.

Have you tried any cognitive behavior therapy? It's a strategy that helps your child recognize the feelings as they're building and develop strategies to manage them instead of being victim to them. You can try naming the rage (we used Edgar the Angry) and then you and your son address "edgar" whenever he is raging. It turns the behavior into a 3rd party and gives you and your son a common enemy. It helps your son understand when you are angry at the behavior yet you can still love him. It also allows your son to see the behavior/illness as separate from himself (i.e. my behavior is bad, not "I am a bad person". I realize that an 11 year old can be very strong. But if you don't establish yourself as the one in charge, it will only get worse as he gets older. During a rage, a person can be terrified at feeling out of control. If the people around him are also acting like they are not in control, it can make the fear and anger even worse. You cannot come across as a victim and you cannot put your parents in a position of being victims either. You have more than just your son to protect. Initially, this may mean restraining him, or at least physically protecting yourself, although I completely understand your reluctance to do so. But as I said, you are responsible for the safety of everyone. Your son's emotional well being is important, but it is no more important than the well being of the rest of the family. I would strongly encourage you to work with a therapist trained in CBT (and ERP if OCD is also present). A person in a rage is often unable to control themselves. But after a rage, there need to be discussions and there need to be limits set. It can be ok for your son to get angry. But he should punch a pillow or a punching bag or go to a designated room and scream his lungs out. But if he throws something, or tries to injure someone or breaks a valuable, then there should be firm consequences, not negotiable. He needs to learn acceptable ways to vent anger. It's a life skill. The rest of the world will not tolerate having floppy drives thrown at them, regardless of any mental or physical illness. I don't mean to sound so unsympathetic. I've lived with rages, albeit with a smaller child. But I've seen the damage an uncontrolled rage can do - physically and emotionally, both to the child and to the rest of the family. I know it's exhausting and without proper medical support, it's no wonder you're at the end of your rope. But one step toward recovery is in taking back control. It may take awhile to find the cause of all of this. But personal and emotional safety can't wait for that. If your son isn't normally like this, than build on his understanding when he's calm and explain that the rules don't change when he's angry. If you see him walking around with a "weapon" (which carries an element of premeditation), let him know he will lose privileges that matter to him. You will feel empowered and he will feel better knowing someone is taking steps to keep everyone safe and is in charge. As a second step, I agree with the others. It doesn't sound like you've hit upon the right doctors yet. A doctor looking at your son's symptoms and not swabbing a red throat is not on board. We had our ELISA lyme results back from Quest in a week, not 4-5 weeks, but either way, ELISA isn't going to give you reliable results anyway. If you suspect Lyme, you really need to have lyme testing done thru a specialty lab. You can also test for yeast with blood tests and stool tests. But you need to be under the care of a doctor who understands what tests to order and what to do with the results. I'd suggest a lyme doctor from www.ilads.org (go to the "contact us" tab and send them an email with your location) or a DAN doctor (http://www.autism.com/fam_whatisautism.asp - in the middle of the page is a "find a physician" search bar). Since you've seen times where rages weren't like this, keep following your instincts to uncover the medical trigger. But in the meantime, realize you and your son can take steps (on your own or with a therapist) to take back control of what I know is a very scary and horrible situation.

For whatever it's worth, DS8 started taking Alpha Lipoic Acid in Oct for detox and it really seemed to help with brain fog (as did the Bactrim). But he complained about trouble swallowing the uncoated pill. So this week, LLMD switched DS to oral glutathione in a capsule. DS said on Day 2 he could definitely tell a difference and he thought it was great.

Just to clarify - my DS was also "classic" Pandas - sudden onset tics/OCD and all other dozen symptoms w/in a week of confirmed strep/scarlet fever, not once but twice in 8 weeks. Later we also found lyme. I didn't mean to imply I "mistakenly" thought DS was Pandas but then he was really lyme. In his case, I think he had both - separately acquired illnesses that made each one worse and harder to eradicate. But I don't mean to start any debates. Just clarifying my own experience. So as to bring the thread back to the initial concerns over treatments, long term abx have certainly been pivotal in my son's treatment(s) for both diseases and the whole family would be casualties if we hadn't been able to get them from courageous doctors. It's great that naysayers have recently published signals that the debate over the existence of Pandas may be drawing to an end. I only hope the debate over treatments isn't equally controversial and harmful to our kids (especially since DD5 is now showing more serious signs - of something).

I read Cure Unknown last spring and was also struck by the political parallels to Pandas. And even tho my DS was still relapsing despite pex, despite long term abx, despite 2 months symptom free after prednisone tapers, despite the fact we weren't getting back to 100% anymore, I still didn't recognize him in the book (but my best friend did). I kept blaming relapses on "exposure" because I didn't see the 4 week cycle of lyme. He had a completely negative standard western blot, didn't have headaches, had muscle pain and brain fog (which I attributed to Pandas) but not joint pain, didn't have fatigue...So we did IVIG as a last ditch effort to put this all behind us. Ours was a bad experience post-IVIG. Scrambled eggs for brains, rages, serious OCD, urinary frequency every 10 seconds...and it didn't stop. It was only after 9 weeks, when it was obvious something was still wrong, that we discovered the lyme. 2 months into lyme treatment, my son is experiencing remarkable improvements. I am dumbfounded. I can't even say if he's 100% because he got sick sometime in kindergarten and is now in 3rd grade - so I don't know what 100% might be. But whatever it is, I think I'm in for a very nice surprise. I don't want to hijack this thread and focus on the lyme. But I did want to second the thought that this Pandas path is very similar to the one described in Cure Unknown and also point out that even though lyme has far more research behind it, there is still no clear cut path, no widely accepted protocol in the general medical community. So I do hope any white paper and any upcoming research helps move us a little forward. But the parents are still going to have to keep educating, keep pushing for treatments, keep fund raising. We still need to let Drs X, Y and Z know what happens to our kids after they leave the doctor's office and still need to respectfully examine what they do or say against our own experiences and keep supporting each other. My fear after reading Cure Unknown was that the Pandas community would be fractured in the same way as the lyme communities. I thought Vickie's Youtube presentation was great. So much was done this year. But I'm personally looking at any white paper as another stepping stone. Something to build on. I think we parents still need to look at a 5-10 year plan and maybe start thinking of some new years' resolutions to see how we can collectively make 2011 even better for both the recognition of disease and for the health of our own kids.

I agree. For what it's worth, we did pex and it helped a great deal, even tho my DS may have had lyme at the time. It removed the autoantibodies and it gave him relief (tho it did not remove the underlying infection, so we still had to find the lyme/bartonella and treat it before we started to see sustainable improvement. So pex may help, but it will also screw up any future testing for lyme for awhile, because you'll be removing most of the existing antibodies that would show up in any test. You'd have to wait for the body to make new ones. I don't regret pex at all. But twice a day, I reach for my son's $3 bottle of bactrim and marvel at the irony that it has done more for DS than the $20,000 pex treatment. I'd suggest a trip up the NY thruway or eastbound I-95 into CT to see an LLMD. But I suspect you already knew that.

Not that it would change anything, but this doctor needs to pin this map on her wall... http://www.cdc.gov/ncidod/dvbid/lyme/ld_incidence.htm Sure looks like lyme can be in NC to me.

IVIG is always a very personal choice. With no black and white answers from research and such a financial impact, you really have to make this decision based more on your own individual circumstances rather than on what has or hasn't worked for other people. Each kid has so many unique things that may not be conveyed on the forum. So even if 20 say it was great and 3 say it was horrible (or vice versa), there's no way to know if the same will be true for your child. You will have to trust your instincts on this. That being said, there were two things that struck me in your post. First, you don't have lyme results and second, you don't have complete Cunningham results yet. I think I'd wait for these results before making an IVIG decision (since it sounds like it will have a big financial impact on your family). Being negative on co-infections doesn't mean negative on lyme. Knowing if other Cunningham markers are elevated may help you know how severe (or not) the autoimmune factor is in your son's condition. I know it's tempting to look at a calendar and pressure yourself to do a medical procedure at the "best" time. But let's say your son had lyme - then doing IVIG prematurely (prior to significant treatment with the correct abx combo) could really give you a prolonged negative recovery - which would screw up your calendar way more than doing IVIG sometime other than the holiday break. So follow a plan that's guided by test results rather than a calendar. You just can't predict IVIG reactions that well. It seems like you might want to give the doxy (or maybe bactrim or omnicef or other myco p abx) a more consistent trial of a month before making any decisions. Whenever we need to change our pill schedule, it's easy to forget a dose until it becomes routine. So we set alarms on our cell phones (currently have 4 alarms per day). It's saved the day more than once. You may also want consider doing probiotics just before bed instead of during the day. Our LLMD likes patients to take them at bedtime because the stomach acid is lower and the probiotics can sit in the GI tract longer when the body is at rest and not actively moving things along. Finally, you don't say what kind of doctor you're working with (sorry if I should know this from other posts). But since you're still searching for that needle in the haystack, I'd consider an LLMD for a consult. As a "breed" of doctors, they seem to be more open to looking for that needle and know how to use various abx and supplements more effectively. I know that means more waiting, more money with more doctors. But I'd really encourage you to keep digging and know what you're treating before trying IVIG to "see if it works." I'm not against IVIG but it is a big deal. I'd do more homework first. I know you must be exhausted and want this to just be over with. Try to hang in there.

Emma, tried to PM you but your mailbox is full... Laura

Me too! What an inspiring 3 minutes - thank you for taking the many many minutes it must have taken to put this together. When 2010 showed up on the calendar, I knew it was going to be a year of hard work and battles. It's been that in spades, in so many areas of my life. You actually made me look forward to 2011 and feel optimistic!

This is a quote from the end of the article (bolding is mine): "To clarify the phenomenology, classification, mechanisms, and optimal therapy of these conditions, we recommend that the following be carried out for any child or adolescent presenting with acute onset of a choreoathetotic, tic, or myoclonic movement disorder, particularly when combined with psychiatric features and following a febrile illness: standard throat culture; blood testing for antistreptolysin O and anti- DNAse B antibodies; echocardiography; MRI of the brain and lumbar puncture for examination of glucose; total protein; and cells and myelin basic protein. Antistreptolysin O and anti- DNAse B titers should be rechecked after about 6 weeks. Patients with a movement disorder should be examined by a movement disorders specialist or at least videotaped for later review. Patients with chorea and evidence of a recent GABHS infection (within the prior 6 months) should be treated with antibiotics for suspected Sydenham chorea as recommended by the American Heart Association.22,28" Thanks Mary!

I don't think there's one specific combo of abx for lyme. I think the LLMDs use certain combos based on symptoms and their suspicions of co-infections. And then after a time, I think any combo is switched around because lyme can become resistant or go into cyst-mode, etc. and different abx work best for different states (active, cyst etc). But I'm not a lyme expert. Before seeing the LLMD, our doc tried one month of azith + augmentin and we saw no change. When we started with the LLMD, he suspected Bartonella as a co-infection and wanted to add doxycycline but due to my son's young age and tooth development, that wasn't an option. So he added Bactrim and we've seen some really good -and lasting- improvements. I suspect at some point, our current abx combo will change. We continue on augmentin thru the winter for Pandas/strep, tho I don't believe augmentin is a common abx for lyme. LLMD just wants to make sure strep doesn't re-enter the picture. The key for us was that DS would have periods of remission with just augmentin, but he stopped returning to baseline and remissions didn't last longer than 2 months. I initially discounted lyme because DS responded well to prednisone and I didn't see a 4 week cycle of behavior changes. But LLMD explained that a month of prednisone taper wouldn't necessarily exacerbate lyme symptoms and the pain relief could be significant, so in one sense it was helping. All I know is that the boy who struggled to write an 8 sentence "book report" last spring wrote a 4 page Halloween story a month after adding bactrim and the boy who tired after reading one sentence of a book 8 weeks post-IVIG this summer just read 150 pages in three days. I know it's not going to be all sunshine and roses - we still have muscle pain, occasional memory and attention issues, spelling still stinks but is slowly getting better - but he's light years better than just a few months ago. So I'm glad I didn't get accept the "negative" igenex report and pursued treatment based on those "indeterminate" bands. I'm not against IVIG at all. And I don't mean to hijack this thread. We've just had far better results by using the right (for my son) combo of abx. I do hope someone chimes in on your second question re: HD/LD IVIG. That's something I don't have any experience with. It sounds like a tough decision. I hope you find the right answers for your sons.

We did Igenex testing 9 weeks post-HD ivig. Our overall report was negative but there were enough positive bands and lyme-specific indeterminates for our LLMD to feel a lyme/bartonella protocol was worth trying. The results have been far better with this approach. We are seeing very positive things. So before doing additional IVIG at any dose, my personal opinion is that it's worth doing Igenex to make sure a chronic infection isn't getting in the way of sustained progress. I don't know why you'd need to wait another month. But certainly do what feels comfortable. One thing to consider - high C3D immune complexes can cause a false negative lyme result. So have the C3d levels checked at the same time you do the igenex draw so you have an idea of whether a false negative is possible. In our case, very high complex levels + indeterminates = lyme for our LLMD. I was skeptical at first, but am amazed at the changes. Best of luck with your very difficult decision.

I asked our LLMD about this. I had always dismissed lyme because DS responded amazingly well to 3-4 week steroid tapers. I figured if lyme, his symptoms would get worse because the Lyme would have a field day. The LLMD said a month of prednisone isn't considered "long term" and that if the patient was feeling really lousy from Lyme symptoms, the prednisone would bring temporary but significant relief from the pain, so it would feel like it was working. With Lyme, the prednisone wouldn't do significant harm if only used for a few weeks (tho if you know you have Lyme, prednisone is avoided - the LLMDs use anitoxidants to bring relief instead). So it's not something you'd use if you have confirmed Lyme, but it's not going to dramatically set you back if only used for a short time, especially a 5 day burst. At least that was his take on it.

It's been over 2 years for us and I still remember certain "anniversaries" - Thanksgiving-eve being one of the worst days of my life. That's the night my son flipped out over making an apple pie and ended up under the coffee table, psychotic and terrified. I thought my world had forever turned upside down and I remember it like it was yesterday. Since that time, we've been down a long road. But I'm thankful to say we never returned to days that bad. Now that you have a Pandas doctor on the team, it's unlikely you ever will either. I have a second child who sometimes shows signs of risk - mild compared to her brother - but still enough to make me hold my breath. But she doesn't have the same mother that my son did when this hit him. My younger child's mother has heard the word "Pandas" and has Pandas doctors on speed dial. Her mother has prednisone in the refrigerator and knows that behaviors, not strep tests, guide me in when to call a doctor (and it is not the pediatrician - it's the doctor who understands this disease). Genetics might mean we won't escape a second go-round with this disease. But it doesn't mean history will repeat itself. Because now I am armed with knowledge and allies. My daughter is only 5 but we are already practicing ERP and giving her tools for if or when she might need them. We have a therapist and school system that's already been through this once (and has other Pandas kids in the school). Is it my fear? Yes. But it isn't keeping me awake anymore. I know the fear can be overwhelming. But when it strikes, you need to take stock of what you have on your side now. You have a great doctor, you have this forum, you have knowledge and you have power. You have come a long way and I think it's ok to believe in yourself. As I always tell my daughter - "Don't let the fear fairy ruin your life. YOU are the boss."

Alpha Lipoic Acid - it's a supplement that's supposed to increase the body's production of glutathione - both are antioxidants. It's supposed to help with the brain fog. I don't know if it's the thing that's helped, or the bactrim (we also have Bartonella here), but something has really helped in the past 2 months. So I'm sticking with it. Re: the rages - we used to have terrible rages during the height of Pandas. CBT (cognitive behavior therapy) and having appropriate things to take anger out on (pillows, punching bags - not little sister) has helped a lot. Even tho there's a medical reason, we still put a lot of energy into helping DS learn to control his temper - we had to for little sister's safety. Let me know if you want to discuss further.